Elsewhere…

Great Articles

On the food allergy front, there have been some great articles and posts recently that I wanted to highlight because they’ve enhanced my knowledge of the development of allergies:

Protect Your Digestion, the First Line of Defense Against Food Allergies by Dr. Eva Untersmayr – This article is fascinating, if I’d seen it before my presentation last week I would have had to mention it.  Be sure to explore the fantastic website AsthmaAllergiesChildren.com (the site’s founders will be at the Food Allergy Bloggers Conference, see the agenda for details).

From the outside in: How eczema could lead to food allergies by Iona Twaddell – I am trying not to let mommy guilt get to me when I read research articles but I do confess to wondering often whether using Aveeno lotion (which is oat based) with my daughter is related to her severe oat allergy.  I was directed to this article via the twitter feed of Anne F. Russell BSN, RN, AE-C (who will also be a conference speaker and helped us proofread the conference brochure I created… download the brochure here as a pdf – thank you Anne!).

Genetic glitch at the root of food allergies? by Jessica Martin, PhD – I love how Jessica breaks down concepts.  The other day she e-mailed me a detailed response to a question I had and hopefully you’ll see it on her Food Allergy Sleuth site soon.  When she bought a ticket to the conference I was thrilled because I can’t wait to meet her.

Food Allergy Walk and Food Allergy Bloggers Conference

I have a fundraising page again this year for the Food Allergy walk here in Las Vegas, Nevada on November 2, 2013.  I’m on the walk committee and also a co-founder of the Food Allergy Bloggers Conference that will be kicking off with the walk and running through November 4, 2013.  So it will be a big weekend for Food Allergy in Southern Nevada!  We need team members and virtual walkers are welcome!  If our team raises $1,000 before August 31, 2013 our team name will appear on the official walk t-shirt!  We’re just about halfway there, donate and/or join today!

(If you’d like to have a chance to win tickets to The Wizard of Oz at the Smith Center, check out the team page of Young Artists Supporting FARE – a $10 donation during their raffle period earns an entry.)

An Allergy Friendly Kickstarter Campaign

Ending September 10, 2013, here is a Kickstarter campaign that might be of interest – it involves a top 8 allergen free, vegan candy that I’ve backed and you may want to as well!  Premium Chocolatiers needs to raise funds for the equipment necessary to manufacture their vegan marshmallow coated with chocolate and candy.

Vegan, Allergy Friendly Kickstarter Campaign
Vegan, Allergy Friendly Kickstarter Campaign

The way the Kickstarter website works is that if the funds needed to achieve the stated goal aren’t raised, the campaign doesn’t get “funded” and none of the money pledged is charged.  They’re almost halfway to their goal with two weeks left and I’d love to see this idea take off.  $7 gets one bag of “No No’s” shipped to US addresses sometime hopefully in time for Halloween, so check it out here.

The VanSquigglebottoms-to-be

Something with a deadline that is a little further into the future is the fundraising campaign my friends Jessica (not the same Jessica I mentioned above) and Jeff have launched that involves changing their last name to “Van Squigglebottoms” permanently and officially if they raise $1,000,000.00 for Oxfam on or before December 31, 2013.  I hesitated to donate only because I like their names as they are but then I got to thinking that I love the positive approach they’re taking.  They care passionately about the causes associated with the less fortunate and they’re willing to do something off the wall to get the attention they feel this cause needs.  You can see their fundraising page here and I can assure you that even the smallest donation will cheer Jessica and Jeff on.  Even if all you can do is spread the word about their fundraising efforts, that may prompt someone else to donate.

Children’s Literature (and Music!) Reviews

Finally, it has been a while since I rounded up my latest Vegbooks.org reviews.  I’ve even had the chance to review some music which was a lot of fun.

Mind of My Own (CD)

Say Daddy

Where to Sleep

Steam Train, Dream Train

Memoirs of a Goldfish & Memoirs of a Hamster

Paper Son: Lee’s Journey to America

He’s Been a Monster All Day

Blink of an Eye (CD)

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School starts tomorrow and E turns 5!  It is exciting and surreal at the same time.  Have a great week, all!

Starting School in Earnest, Earnestly

I’ve never felt like I’ve particularly “held it together” but some friends were remarking this weekend that I had to have a cape at home and to that I would say appearances are deceiving.  Especially in the blog world where we pick the best picture from several or edit and curate and edit some more.  I don’t think that in each specific circumstance what one writes is inauthentic as a blogger, just that our lives can appear outwardly like the best of ourselves.

I love the online food allergy community and the support we all give one another but it makes an already constant presence (food allergies) infuse even more into my daily life.  Reading labels has become second nature so it takes up less time but the time I spend online thinking about food allergies remains the same.  I guess I’m mentioning this because I have increasingly written about advocacy on this blog and I don’t want it to seem like I know what I’m doing.  I’m muddling along and this new phase, kindergarten, is putting me to the test.

On Monday I was invited to my daughter’s school to give a presentation to 25 or so staff members about food allergies.  The school nurse introduced me and mentioned Nevada’s epinephrine mandate.  Then it was my turn to speak.  I was asked how to make other students a part of the team, so to speak, in keeping students safe that have food allergies.  I was asked what my daughter thinks of “all of this.”  I was asked about airborne allergen risks.  And “may contain” warnings.

I speak in public all the time professionally but am finding that food allergies are so intensely personal that my near constant anxiety feeds into even positive advocacy experiences.  While I waited for my scheduled presentation I heard my phone chime again and again as it does during the workday with emails from parties, opposing counsel, clients, and more.  I knew that I would rather focus on reviewing the FARE action plans (FARE FAAECP August 2013) I had printed off to distribute to my audience but I felt the dread creeping in about the unfinished work and snuck outside to return a phone call.  I didn’t want to, and yet I thought it might calm my nerves about my presentation.  It didn’t, but as usual once I started I think I did fine.

As I went up to speak, my daughter’s kindergarten teacher smiled encouragingly at me.  It meant a lot that she and the school nurse are on the frontline of our support network at school because the fact that their kindness and goodness are directed to my daughter means that I am a part of something kind and good.

As an aside, it makes me wonder if there’s a self serving component to service.  Do I help because of someone I aspire to be?  Is it all just a part of my tendency to mediate and accommodate at every turn?

I told the audience that my daughter thinks food allergies suck (my word, not hers).  I told them that she just wants to be like other children.  I told them I have never explicitly told her that one can die from an allergic reaction but that she knows it can affect breathing and that we need to breathe to live so she probably already knows what that means.

I also told them that kids are compassionate.  That classmates will want to help keep friends safe and that in my experience I find adults are the resistant ones.  I by no means was up there advocating food bans, just how to recognize a reaction and what to do, as well as hidden allergens such as those that remain on surfaces or that hand sanitizer has no effect on.  I mentioned the remarks of adults online that were harsh and cruel to kids with food allergies and there was a collective gasp.  I usually try to stay positive but I wanted them to know that there was a negative side.

I think I scared them a little with the idea that even adults can suddenly experience an allergic reaction where there was none before.  I also spoke about some of the more recent deaths.  I just wanted to drive home that safeguards and protective measures are for the benefit of all.  That knowing what to do in an emergency will help.  And I also spoke of my responsibilities as a parent.  How parents I know of attend lunch with their children at school to help monitor them.  That I was happy to buy safe snacks for classes, to provide idea lists, to answer their questions.

Cartoon Courtesy of FoodAllergyFun.com
Cartoon Courtesy of FoodAllergyFun.com

I also shared the cartoon above and the whole room erupted in laughter.  Thank you so much to Tiffany Glass Ferreira for the awesome resource she provides with her insightful work.

Speaking of saying thank you, my sister in law teaches third grade and I asked her how to approach this particular group of teachers.  She gave me some wonderful advice that I wanted to share in part here as the school year starts around the country:

I had a parent train me in using her kindergarten daughter’s epi-pen […s]he was very calm and matter-of-fact. She showed me how to use it and we talked about when to use it. She told me that even though there could be side effects it was best to err on the side of injecting vs. not injecting if [the student] started having trouble breathing (and a few other signs [the student] had). It was sort of a “you’ll know it when you see it and don’t hesitate” sort of thing. She told me that overthinking whether or not to inject was a waste of valuable time and it was better to inject and find out it wasn’t necessary than to NOT inject and have [the student] become unconscious, it was better to get the medicine in her and the sooner the better. […]

So l guess just stick to the facts. What are the signs that something’s wrong, how to use the epi properly, and what to do next (call 911, call family). It might also be a good idea to give the staff permission to give the other kids a heads-up or at least let them know what to do if something happens on the playground. […] a general sort of “If something happens or someone falls down on the playground make sure you tell a teacher”. There is always playground supervision, but I know too well (and I’ve done it myself), that when you get 5-6 teachers on duty they tend to drift together to chat instead of keeping an eagle eye on the kids. […]

Their ultimate goal is to keep her safe and happy and learning at school, so I don’t think you’re going to meet much resistance or have anybody be disrespectful or anything. A lot of them are probably parents, too. Make sure you thank them for their time…if you’re doing a whole staff training then they are most likely staying after school or losing prep time of some sort.

Remember that while you have one baby going to school, they have hundreds of babies. See if you can phrase things in a way that suggests setting things up to protect all of the students. There is bound to be at least one other child with food allergies on campus, maybe undiagnosed. Knowing what signs to look for might save another child’s life, too.

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Re-reading my sister in law’s advice reminded me that after my presentation I had an audience member come up and tell me she wanted to give me a little hope for the future.  She certainly had my attention at this point and she told me about how her children, now young adults, had grown out of multiple food allergies and that it was possible.  Connecting with people on that level gives me a boost I need to forge along and continue sharing.

This is my 250th post!  I wanted to share a link to my fundraising efforts for the Las Vegas 2013 FARE walk (click here to donate).  FARE has been instrumental in so much involving schools in Southern Nevada and around the country.  I’ll be at the walk and at the Food Allergy Bloggers Conference that weekend as well.

Food Find: Enjoy Life Decadent Bars

Enjoy Life Decadent Bars

It is always a happy occasion when a box bearing the Enjoy Life Foods sticker arrives at our door, though I did hesitate briefly when offered these bars to review (I was not compensated in any other way) because it had been hovering at 105 degrees Fahrenheit of late.  Vegas summers don’t kid around.  Luckily, putting the entire shipping box into the fridge the minute these arrived seemed to have protected these sweet treats.

In the interest of full disclosure, this was not my first taste of the new Enjoy Life Decadent Bars.  I ordered a Gluten Free Saver special a while back and though the kids adored them from the get-go, my husband and I were disappointed because of our own high expectations.

Speaking of our high expectations, I was at work the day the initial box arrived and my husband sent me this picture with the suggestion that I hurry home:

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…followed by this picture to assure me that our children “wouldn’t suspect a thing.”  It still cracks me up with the parenthetical:

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At any rate, my husband and I weren’t planning to buy Decadent Bars again because we still preferred Chewy Bars.  I think it is like when your favorite musical artist puts out an album that is good compared to other music in general but isn’t your favorite compared to their own previous work.  I know I feel disloyal when I don’t adore a song by Morrissey but sometimes it does happen.  I love Enjoy Life because they are not only top 8 allergen free but oat free which is a specific allergy my daughter has (her allergen list is currently: oat, peanut, tree nut, and sesame).

At any rate, though these aren’t the revelation Plentils were in our household, I’m so glad I gave these another chance as I now have some tips for getting the most out of the experience.  My husband and I agreed they were much better with the following caveats:

1) Don’t expect the flavors to match the names exactly – Chocolate Sunbutter is the most accurate of the four varieties, with Cherry Cobbler coming in second.  The Chocolate Sunbutter has a drizzle of chocolate and isn’t as sweet as the other flavors but in a very good way.  It lets the Sunbutter shine through.  The Cherry Cobbler seems to have other reviewers split about the strong fruity/tart flavor but it ended up being my favorite the fist time around because of the white glaze and the cherry notes offered something unique.  That said, the S’mores and Cinnamon Bun Decadent Bars weren’t what I expected.  Still a nice treat but they both had a strong date flavor that hides any intended marshmallow-esque (that’s a word, right?) or cinnamon ingredients.

2) Refrigerate the bars before enjoying – The first time I bit into the S’mores variety it was not what I expected but on the second go-around I found that the graham cracker texture comes through much better upon refrigeration.  This may not be a problem where you live but our house is always about 80 degrees.  The drizzles on the bars are more noticeable when they are refrigerated as well.  

3) Share with a friend (these are too sweet for adults to eat in one go) – When I initially heard the new line to follow the awesome Plentils from Enjoy Life involved more snack bars I wasn’t sure why.  We love the Chewy Bars so I worried the Decadent Bars meant the Chewy Bars may be phased out, however, once we ate these I realized they are very much a candy bar and therefore in a different market niche.  Colette Martin remarked in her own review of these bars that these fall in the treat category and I agree.  It seems that kids across the board love these, while I find kids are usually split 50/50 when we share Chewy Bars with the kids’ friends.  Something to consider as you decide on the right mix of snack foods to keep on hand.

Overall, these are a great option to add to your arsenal but see how you like each flavor on its own merits and make sure they’re kept on a refrigerator shelf out of reach of certain small individuals (who will remain nameless) that have figured out how to open candy bar wrappers.

Enjoy!